About Ali Stunt

Ali Stunt was diagnosed with pancreatic cancer age 41 in 2007. A 7 year+ survivor, Ali is an outspoken advocate for pancreatic cancer and is determined that more have the outcome she has had.
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Last week, a group of researchers at John’s Hopkins University in the USA listed pancreatic cancer as one of those that, in the majority of cases, getting it is just ‘bad luck’.

Published last week in the journal, Science, the researchers looked at the scientific literature for information on the cumulative (increasing) total number of divisions of stem cells in 31 different tissue types over a person’s average lifetime. These results were compared with the lifetime incidence of cancer in the same tissues.

Stem cells were looked at because they will renew themselves and will repopulate cells that die off in a particular organ.

Cancer arises when tissue-specific stem cells make random mistakes, or mutations, when one chemical letter in DNA is incorrectly swapped for another during the replication process in cell division. The more these mutations accumulate, the higher the risk that cells will grow unchecked – a hallmark of cancer.

The scientists calculated that two thirds of cancers are attributable to the random mutations that occur in stem cell divisions throughout a person’s lifetime, while the remaining risk is associated with environmental factors and inherited gene mutations. And, for organs that have a high stem cell division rate, there was a greater likelihood of developing cancer. (The more often cells divide, the more likely it is that letters of their genetic code will become renewed with a mistake, leading to an increased cancer risk).

Cancers due to ‘Bad Luck’

Cancers due to environment + bad luck

Pancreatic

Skin cancer

Brain

Throat

Head and neck

Lung (in smokers)

Thyroid

Liver

Oesophageal

Bowel

Lung

Bone

Liver

Skin

Ovarian

Testicular

As we see, pancreatic cancer is on the list of ‘bad luck’ cancers , which may help explain why I, at the age of 41, developed pancreatic cancer without any of the associated risk factors for the disease. I know of many other patients who have not been smokers and have led healthy lifestyles and have still developed pancreatic cancer. Sadly, many of them are no longer with us as their disease, unlike mine, was diagnosed at a stage where it was too late.

So, do we ignore the fact that smoking can account for 29% of UK pancreatic cancer cases and obesity, 12%? No we don’t and public health messages are important to help prevent some cancers. If someone can prevent himself or herself from developing cancer by not smoking, that has to be a good thing.

Because this study has shown that two thirds of pancreatic cancer cases are random bad luck, then we need to up the focus on early detection for this disease (the key area that Pancreatic Cancer Action works on) as preventative measures are not going to make much of a difference.

Professor Bert Vogelstein, M.D from Johns Hopkins University School of Medicine who conducted the study said:

“If two-thirds of cancer incidence across tissues is explained by random DNA mutations that occur when stem cells divide, then changing our lifestyle and habits will be a huge help in preventing certain cancers, but this may not be as effective for a variety of others,”

We should focus more resources on finding ways to detect such cancers at early, curable stages,”

Because of the public perception of pancreatic cancer , a lot of it ill informed or false, there can be a stigma attached to being diagnosed. I would like to request that people now do not ask me: “oh, did you drink a lot, is that why you got pancreatic cancer?” No I didn’t. And, I tell you, there is no direct link with alcohol and pancreatic cancer. I was also not a smoker nor was I obese. It was, it seems, very bad luck that I developed pancreatic cancer but extraordinarily good fortune that I was diagnosed in time for surgery.

Today, 30th December 2014, the National Institute for Health and Care Excellence (NICE) which makes recommendations on which medicines should be funded by the NHS in England, published its Final Appraisal Determination (FAD) on the use of nab paclitaxel (brand name Abraxane® ) with gemcitabine for metastatic (advanced) pancreatic cancer.

NICE has recommended that Abraxane® should NOT be funded by the NHS in England – on grounds that it is not cost effective.

This, in our opinion, is a backward step by NICE and represents a serious setback for patients and clinicians in England.

In December 2013, the European Medicines Agency (EMA) granted a licence for nab-paclitaxel, in combination with gemcitabine, for the first-line treatment of adult patients with metastatic pancreatic cancer.

Currently Abraxane® has been approved for routine use in eligible metastatic pancreatic cancer in the following countries:

Earlier this year, the All Wales Medicines Strategy Group approved Abraxane® plus gemcitabine for NHS patients in Wales.

Nab-paclitaxel in combination with gemcitabine has not been recommended by NICE for adults with previously untreated metastatic adenocarcinoma of the pancreas and has not been considered a cost effective use of NHS resources compared with treatments such as FOLFIRINOX and gemcitabine plus capecitabine (Gem Cap) for metastatic pancreatic cancer.

We are also concerned that Abraxane® will be dropped from the Cancer Drugs Fund (the only way patients can access it via the NHS in England) as it is one of a group of medicines currently under review by the Fund. A decision will be made in early January.

While the economic modelling criteria NICE uses found that Abraxane® does not prove to be cost-effective, we believe that pancreatic cancer, with its low 3% five-year survival which has not improved in over 40 years, the fact that it is the UK’s fifth biggest cancer killer and that there are very few treatment options available to patients, should be considered as a special case. There is clear unmet need for this disease and NHS funders need to take this fully into account. Abraxane® isn’t that expensive either – according to the manufacturer (Celgene) in their submission to NICE, the cost of average use (3.4 months) per patient is £5,035.

Pancreatic Cancer Action, along with Pancreatic Cancer UK, submitted evidence to NICE to support approval for Abraxane for advanced pancreatic cancer. We challenged the fact that NICE was comparing Abraxane plus gemcitabine against FOLFIRINOX and Gemcitabine plus capecitabine (Gem Cap) as neither of these regimens is approved by NICE. Currently, gemcitabine alone is the only chemotherapy treatment for metastatic pancreatic cancer approved by NICE.

In clinical trials, Abraxane® plus gemcitabine has shown to improve survival by an average of 2 months when compared to gemcitabine alone. This, on the face of it, doesn’t seem a huge improvement, but when the average life expectancy is a mere four to six months, two months more makes a difference to patients and their families. What is interesting from the trial data is that a few patients respond even better with some living up to two years. This accounts for just a handful of patients, but further research we hope will better understand why this treatment is more effective in some patients so therapies can be targeted.

We have also been told by patients and some oncologists that the use of Abraxane® plus gemcitabine offers a truly palliative effect by reducing some of the symptoms of the disease itself such as pain and weight loss.

There has been little or no improvement in pancreatic cancer survival for the past 40 years and to prevent access on the NHS in England to a life-extending drug when there are very limited options for pancreatic cancer patients is outrageous and cruel. With Wales being the only country in the UK to allow patients to be treated with Abraxane® plus gemcitabine on the NHS, patients in other parts of the UK are being put at a disadvantage which is unfair. And, as the UK has some of the lowest pancreatic cancer survival rates in Europe (click on graph to expand), this decision will mean that we will continue to lag behind countries such as Belgium, France and Germany and remain the poor man of Europe in terms of cancer survival.

We urge NICE to reconsider their decision and for Abraxane® not to be axed from the Cancer Drugs Fund.

All of us here at Pancreatic Cancer Action would like to thank you for supporting us during 2014. It has been a phenomenal year in which we have substantially raised the profile of pancreatic cancer – something we couldn’t have done without your help.

We are enormously grateful for all of your fundraising and awareness raising activities this year and we look forward to working with you again in 2015 when we will be revealing some exciting projects we have been working on.

All of us here at Pancreatic Cancer Action wish you a very merry Christmas and a happy and healthy New Year!

Please note:
Our office will be closed from 5pm on Tuesday 23rd December until 9am Monday 5th January. If you need to get in touch with us during this time, please email us at enquiries@panact.org (this email address will be monitored over the festive period).

It’s been a busy month for raising awareness of pancreatic cancer in Northern Ireland. Firstly, Kerry Irvine, our hard-working and dedicated Regional Rep held a Purple Starlight Party of Hope on 1st November – an annual event in memory of her husband Noel who died from pancreatic cancer in 2011. We were delighted to award Kerry along with Maggie Watts with one of our ‘Special Recognition Awards’ at that event for their hard work raising funds and awareness of pancreatic cancer.

On Monday 24th November we held an event in the Long Gallery, Stormont to raise the profile of pancreatic cancer among MLAs and MPs in Northern Ireland. An open-door event, MLAs from across the region paid us a visit to view our awareness displays and to discuss with us in detail the issues surrounding pancreatic cancer. Most were shocked to hear of the grim statistics and the fact that in 2012, 244 people were newly diagnosed with pancreatic cancer and 243 people died of the disease in Northern Ireland. They were also interested to hear that out of over 1200 GPs, only 56 had taken Pancreatic Cancer Action’s e-learning module “Diagnosing Pancreatic Cancer in Primary Care.”

We were delighted with the turnout which included the Northern Ireland Health Minister, Jim Wells. Mr Ross Hussey, UUP West Tyrone even walked away with one of our large blown-up symptoms posters to display in his constituency office window!

Our thanks to Mr Tom Buchanan, MLA who sponsored the event and to Adele Crawford who has helped us immensely over the past few months.

During the evening of 24th November, we along with families affected by pancreatic cancer were invited to a reception held by the Lord Mayor of Belfast, Nichola Mallen at City Hall. Ms Mallen took time out to chat to the families and listened intently to their stories. One family told of their relative who was diagnosed in August this year and died only 17 days later!

When everyone stepped outside following the Mayor’s Reception, we could see that Belfast City Hall was lit up purple as part of our #turnitpurple campaign – it was a spectacular sight!

Belfast City Hall turns purple for pancreatic cancer awareness month

I’d like to thank Kerry Irvine for being the driving force behind all these activities. Her tireless public and parliamentary campaigning is giving pancreatic cancer a much higher profile in Northern Ireland. It is also with the generous support of MLA Tom Buchanan that Kerry and others have been able to to arrange the events that took place in Stormont.

A huge thank you also to all those MLAs, MPs and public health officials who attended the events in Stormont and also members of the public who supported all the activities that took place in November, and for their support in the fight against pancreatic cancer.

“If we put our minds and resources together we will be able to improve things for all those suffering with this disease. The EU has a prominent role to play”. Françoise Grossetête, MEP

Yesterday I attended the very first Multi-Stakeholder Pancreatic Cancer European Platform meeting at the European Parliament in Brussels. I joined other pancreatic cancer stakeholders: namely MEPs, representatives from patient groups (like me), specialist clinicians and researchers in the field of pancreatic cancer and I was delighted to be the spokesperson for UK pancreatic cancer patients and their families.

What was clear was the agreement among delegates and MEPs alike that pancreatic cancer patients across Europe have been neglected and the disease underfunded for decades. What we did see however, was a clear motivation for change.
This meeting has been supported by The European Cancer Patient Coalition (of which Pancreatic Cancer Action has become a member) and four key MEP pancreatic cancer champions: Phillipe de Backer, Françoise Grossetête, Phillipe Juvin and Daciana Sârbu and without their commitment it is unlikely that this important meeting would have got off the ground.

We discussed issues around 3 key areas:Improving awareness of the disease and the issues surrounding it, to both the public and medical community.

Pancreatic Cancer Registry – a call was made for the inclusion of pancreatic cancer data in the European Network of Cancer Registries (ECRN ). It is so important that the data on pancreatic cancer across europe is collected in the same manner and reported on in the same way – this way we can easily compare countries – finding the best performers and learning from their best practice – adopting policies and patient care across the EU – so narrowing the inequalities that exist currently.

Early diagnosis is the third area – lots of discussion aroud this area and it will be good to sharePancreatic Cancer Action’s medical education initiatives such as our e-learning module for GPs and hospital doctors with our European colleagues.

It was decided to develop work groups for all three priority areas and I will be sitting on both the awareness group and the early diagnosis group as these are key focus areas for Pancreatic Cancer Action and where our experience can best be used to develop EU-wide initiatives.

Research funding was also brought up and this thread will be woven throughout all three workgroups.

Ensuring pancreatic cancer is included in key European initiatives aiming at fighting cancer, with a focus on increasing research to better understand the disease, improving data collection, identifying tools for earlier diagnosis, providing educational programmes, and improving standard of care with a focus on active treatment;

Ensuring that Member States include pancreatic cancer in their national cancer plans and in their health awareness programmes

Other speakers yesterday afternoon included European Cancer Patient Coalition (ECPC) President Francesco De Lorenzo, Professor Matthias Löhr, Professor of Gastroenterology and Hepatology at the Karolinska Institute, Sweden. Antoni Montserrat, Policy Officer for cancer and rare diseases, Directorate of Public Health for the European Commission (DG SANCO).

Professor Löhr stated that “Pancreatic cancer is a medical emergency” and that more should be done to improve early diagnosis including increasing translational research into finding a diagnostic biomarker.

To conclude the meeting, Philippe de Backer, MEP said,

“We can feel a sense of urgency and consensus that we can urgently address pancreatic cancer through the European Parliament and also in the member states. Pancreatic cancer as public policy priority is getting more support. This is a start of a process not the end.”

I will keep you informed of further progress but this is an exciting initiative as we were told that EU council recommendation is usually heavily implemented across member states. This means we can make a difference for patents not only in wider Europe but recommendations in the EU could help change policy here in the UK too.